Raincoat's blog

Latest Brilliant NHS Idea

2010-06-17T20:17:34Z

My Chemo Suite cheerfully informed me today that there has been a policy review on appointments, and as a result we shall henceforth have our consultations on different days from our treatment. "WTF???" as my nephew would say.

The reason for this breathtaking piece of blue skies thinking is to reduce long waits for consultations. So now I have to drag myself to hospital (mine 30 miles away) twice every 3 weeks instead of once, not to mention ad hoc scans, radioactive blasts, sundry organ MOT's, etc.

Is my hospital just barking or is this common policy? On the one hand we have the government screaming at us all to work and darkly implying our drugs and benefits will disappear in smoke; on the other the NHS is making my life as hard as possible. I suppose I'm "lucky" to have a job I can do cowering in bed on a laptop and a phone, but I do have deadlines, and how many employers are going to put up with this sort of regime? WHEN IT IS COMPLETELY UNNECESSARY!!!!

Sorry, but it's bonkers. A friend of mine's husband who was receiving treatment marched up to the nurses and demanded to be invited to their Christmas Party on the grounds that he practically lived in the place. Who else knows that feeling??? Am starting to understand people who just can't be @rsed with it all...

Cancer Tourism: MRSA on a Plate?

2010-02-13T00:06:51Z

I am curious to know whether anyone else has transferred to a different hospital within the UK whilst undergoing cancer treatment, and whether they have been taken aback by the difference in the treatment environments; whether indeed they think that it might affect our prospects for a successful treatement.

For the record, I have Stage IV incurable breast cancer with bone metastases. Luckily (ha ha) I currently have no pain or other symptoms. I'm now receiving Herceptin for "life" which is a piece of cake after chemo. Hooray. So every 3 weeks I pop along to my nice northern Scottish hospital, sit for a couple of hours with a needle in my hand and job done...everyone sneers at this hopsital because it's remote and tiny, but now that I have seen the opposition, I shall NEVER complain about it again.

Now that my chemo horrors are over for the time being and the hair is regrowing, I was offered a free flat in central London AND a job for a couple of months. I thought perhaps the Universe was trying to tell me something, and I took advantage of both offers. I was curious to see whether I could reinsert myself into the world of work rather than doss around on benefits for the rest of my allocated life.

It was very simple for me to get transferred to, shall we say, an extremely prestigious Cancer Hospital in London. Now, in Scotland, I march straight into the suite after the dreaded weighing, At prestigious cancer hospital I had to wait for over an hour before being called in, despite having had a consultaiton and weighing session 4 days previously where my scripts were all calculated and I was told, would be prepared in advance of my treatment session. Well, I have enough experience to know that waiting around is just a tedious extra burden on the likes of us. But...

...I am no domestic goddess or cleanliness freak, but was absolutely APPALLED by the conditions! There was dust everywhere, the wooden floor had clearly had a filthy mop dragged over it, the toilets were really not clean, and I know it was generally "dirty" because it brought my eczema on (an internal dirtometer, that one, useful for when you are visiting sanctimonious people who criticise the state of other people's houses!) The whole place reminded me of the ghastly transit lounge in Miami Airport if anyone's had THAT unfortunate experience!

The treatment suite is 5 times the size of my little provincial hospital's, but because of horrendous space planning only accommodates the same number of chairs - which are horrid uncomfortable leather efforts from which you have to peel your body rheumatically and squeakily when you extricate yourself to leave ("MRSA on a plate!" commented the lady in the chair next to me...) There are no tables, so when, like most people, I brought in my own food correctly expecting the usual stale sandwiches clearly filched from a Tesco's dumping ground, I was told to "put it on the floor". NIce! I did mention that if I won the lottery I'd get them a job lot of wooden side tables for a fiver each from Ikea at least.

And they have a dedicated nurse just to insert the bloody cannula! That seems to be all she does! How on earth is that cost/resource effective?? When she's taken away the plastic beaker and wrapped your hand unnecessarily in yards of swaddling, you are left hanging - in my case for another hour - before a chemo nurse comes over to hook you up to the drip. I was practically pleading to be allowed just to do it myself! Not even to mention the fact that we all, including elderly, distressed people, are forced to sign a heap of bafflingly-worded forms confirming we are receiving the correct drugs, presumably to stave off litigation in the event of a cock up in the Pharmacy. Which I think is cynical at best.

The whole hideous experience took 5 hours from start to finish, so forget about a working day. Whereas in Chemo Sutite Heaven in Scotland you are in and out within 2.5 hours.

Now, re-reading this, I possibly sound like a snooty OCD freak or ungrateful, which I most certainly am not - the nurses are professional and cheerful, and of course I am lucky, lucky, lucky to live in a country where at least I get this expensive and pioneering treatment. I have written this really out of utter shock at how horrible the whole environment is. It made me wonder whether, had I been treated down here from the outset, I could have borne actually showing up for chemo or might I just have thought it wasn't worth it? The whole place seems configured to heap misery upon misery

Slate me if you will, but I'm honestly still reeling from the shock of how vastly different the experience of the same treatment can be from place to place. Any comments would be interesting.

Chemo Brain or a bit thick???

2009-10-12T17:37:53Z

Dearest Admins/better enlightened IT hands...

OK, I agree with most of the naysayers on the new site format but accept it's here to stay. Plaintive, but I suspect friviolous to most, request: whether it could be ANY colour other than "bile"???....

Anyway, knowing I am being an unintentional luddite...how do I send a reply if someone writes on my wall? My sole option appears to be "delete". I'm beginning to feel rude, guys....

Cat xx

Chernobyl: My Fall-Out

2009-08-26T15:31:25Z

I have now accepted my terminal diagnosis and am able to have a pretty good life at the moment; unlike many of you I have no debilitating side-effects, a fact for which I'm grateful. I do think 43 is rather young, but chemo suite experience has made me realise that I am fortunate in comparison to these poor young girls aged 30 and under: at least I've had my opportunities and life lessons and adventures. My problem is a nagging doubt about the cause of my cancer. I have blogged about this before so apologies if I'm wasting your time by rehashing events. I have a real need for perspective, and although my friends are hugely supportive and sympathetic, I think you lot are the only people who can give me it. Summary: in 1986 I was a student on a course in Minsk in the Former Soviet Union (a rare thing in these days). Half-way into our 3-month course the Chernobyl accident happened and after a couple of days of faffing around, the Foreign Office evacuated us. I was Exhibit A at the Student Health Service for a couple of weeks and my luggage was dramatically pronounced "contaminated", but other than that there has been no medical follow-up of which I'm aware. Cut to today. When I was diagnosed the GP said he was pretty certain it was Chernobyl-related; the oncologist said she didn't "know what to make of it". The breast surgeon told me had had written to the Royal College of Surgeons to enquire about the suitabliity of raidotherapy in my case, given my exposure back then. The College replied that there was an "incidence" of cancer among my fellow British students of the time. No further details (medical confidentiality, etc). So I felt like pursuing the issue and asked my MP for advice. He wrote to the Secretary of State for Health on my behalf, but because I now live in Scotland, health is a fully devolved national issue and no records are available, even for issues with an international dimension. I did get a letter from the Scottish Health Secretary suggesting I contact the National Cancer Institute, who told me no records were kept, nor interest registered. The obvious course of action would be to find my fellow students and see if there is a statistically abnormal incidence amongst us (there were around 100 of us in Minsk and Kiev so approaching a control group of sorts). Not hitherto possible, alas as we all lost contact and I can't remember any of their names! Have tried creating a Facebook group to no avail. I also contacted the editor of the Lancet Oncology, who wrote back that he lacked the resources to follow up the story but suggested I try the media. Problem. Such a step would be contrary to my nature and of course given the political complexities of the nuclear issue could set me up for being a helpless pawn. Ghastly. Should I just let the issue go? People (including my MP!) have raised eyebrows about a possible cover-up and recommended I access my medical records to see if anyone else has "monitored" them. It's easy to become bogged down in conspiracy theories, but having worked for the government for 15 years I'm less than credulous about their actually having the efficiency or foresight to organise anything of the sort... And let's face it: I smoke, I'm childless, I have a penchant for red wine and I've not exactly been an enthusiast of the gym until recently (am a fitness freak now!!) Perhaps I am just looking for something to blame my fate upon. Thanks if you've read this far; I really would appreciate any comments from fellow patients. Maybe it is time, in the hideous expression, to "move on"??? love Catriona x

Hair Regrowth

2009-07-07T18:01:25Z

I wondered whether anyone has tried a product called N****n, marketed as a volumiser and regrowth agent/follicle booster suitable for chemo baldies? [I won't print its full name as I'm aware the site rightly takes a dim view of gratuitous advertising, but it's so hideously expensive that I'm sure anybody who has forked out will have its name burned on the bank balance-conscious part of their brains...] Nearly four months post-8 months of chemo, my hair is thin and patchy, and a brief comparative survey of my chemo suite mates makes it clear they are all beating me. Even my inscrutable oncologist made an "ooer" gulping noise when I showed her my pate today. I'm serially opposed to wigs, my hair is really too short and patchy to ditch the headrags and I can't wear my foxfur because of all this darned sun... I apologise if anyone finds this post frivolous. My preoccupation may seem all the more odd as I have been told I shall be on and off chemo for the rest of my life, but I suspect some of you may understand. If anyone has any experience of this stuff, I'd be grateful to hear from you. Catriona x

What Next?? Whatever Next!

2009-03-28T10:46:31Z

Following conversation took place yesterday between me and the GP, during bloods test: Doc [in slightly disapproving Dr Finlay voice]: The only letters I seem to get about you from the hospital are regarding your next holiday. Self: OK, take a look at this (points to unsightly and painful lump on wrist) I seem to have been bitten by some evil foreign predator. Doc: Doesn't look like a bite. Seems to me more like a ganglion. Self [horrified]: A f***ing WHAT??? Doc: Ganglion. The traditional Scottish remedy is to drop the family Bible on them from a great height. Contemporary medical wisdom is to leave them alone. Self [weakly]: I'll stick with the contemporary wisdom... Isn't "ganglion" a fabulous word? Seems to me like the verbal equivalent of the Platonic Ideal - like "Prime Minister", it sounds just as hideous and vile as it actually is! I suppose the first rule of cancer is NEVER to say "well, things can't get worse..." - because they always can... Off for a gin and tonic and a stern conversation with my ganglion... Cat x

Let Us Eat Cake!

2009-02-25T16:18:20Z

Now, I'm not one to complain. The nurses in our chemo suite are chipper, chatty and charming, doing a job I could never do, and why they do not all receive gongs in the Hons List escapes me. I know it's not their fault, but is feeding chemo patients another postcode lottery factor?? We get the following fare offered: - Soup. I make a vat of it every 3 days or so at home for nourishment, which I maintain by careful sealing and refridgeration. Am I wrong in having an entrenched idea of it festering in a hospital environment absorbing ghastly germs by the microsecond??; - Plastic-wrapped sandwiches consisting of four triangles of fading brown bread encasing a slice of processed cheese, a mush of tinned tuna or likewise, generally resembling [and tasting like] something to which Tesco has said "yuk throw it out". Anyone want to join my "Cake in the Chemo Suite" campaign??? Why can't we have some of Nigella's fabulous Classic Chocolate Cake or Gordon Ramsay's Chocolate Marquise or something Nick Nairns does with raspberries, oatmeal and lashings of drambuie (pace the alcohol thread)??? I'm sorry, but if they can afford to bail out the banks and fund a couple of overseas wars, can they not give us a bit of 1-2 starred food??? I'd be interested to hear from chemo patients in general - is this another damning sign of Scottish malnutrition? I always crave pizza after chemo for some weird personality-deficient reason, but when I'm miserable and doing a 4-hour chemo, I want to eat nice stuff!!! ps When my friend was in hospital in Paris after a heart attack his doctor told him in hushed, apologetic tones that he should only eat foie gras once a week from now on! Down with rubbish food!!!

Weight Gain/Loss on Chemo: Does it matter?

2009-02-11T11:36:50Z

As a lifelong food-loving yo-yo dieter, I have been making some notes on my weight fluctuations after 6 chemos, and am interested in your thoughts. Please note this is based entirely on my personal experience: My first chemo (FEC, only 2 sessions) had no discernible effect on the tumour but plenty of side-effects including a weight gain of around 2 stones (12 kilos) in as many months. I attributed this to hunger brought on by the steroids but in retrospect I concluded that the cause was more likely to be self-indulgence brought on by general misery including a deliberate blow out over the Festive Season. Telltale signs included reaching for the cheese, chocolate and alcohol; classic comfort material. I was then switched to Docetaxel (Taxotere) with Herceptin and the results could not have been more different: instant (overnight!) effect on the tumour site. But after 3 sessions, I began to suffer appetite loss and taste bud diminution, and have lost around 1 and a half stones (8 kilos) over the last month. So am concluding, if you see my brain-addled logic, that weight gain and loss are perhaps side effects of the side effects as it were. Am wondering how important it is. The docs obviously prefer to see a gain, and I am conscious that my loss has been too fast to be sustainable or probably healthy, but it's actually making me feel better in the interim and encouraging me to do some light exercise too. But as a tight size 14 I have hardly joined the ranks of the skinnies, so does there come a point when it is of concern? I've read comments on here (all from women) about having come through chemo with an extra couple of stones; most have remarked that it is a small price to pay for a successful treatment. As I said, I'd be interested in your comments/experience. Catriona

Hair Envy??

2008-12-07T11:20:46Z

My neighbour has made me a crazy huge fleece hat crafted lovingly in blue with red spots, replete with crown-type prongs. Naturally I do not wear it around town as it runs counter to my - hem hem - highly sophisticated image (says the bald stick-wielding crone), but it's fabulously warm in our sub-zero temperatures and perfect for close-quarters living. I've just got into the shower wearing the b****y thing! Result is soaked fleece and me wondering if this is the "chemo brain" I have heard so much about... Have I finally gone completely barking or have I not learned, after 3 months of chemo, that I now lack a head covering??? Catriona

Travel

2008-11-23T13:51:31Z

I'm interested in views on short trips away from safety. I know this has been discussed here and there on-site. My concerns are focused on general views on leaving sanctity rather than practical questions such as insurance, etc. I think it's fair to say that, in social terms, I have always led an unconventional life. I was always a "career woman"; never interested in children or marriage or strictly monogamous relationships. Lovers, never the affiance. This means that by the age of 43, I may not have a classic infrastructure to my life, but I have legions of friends scattered everywhere and no guilt about how I apportion my time. Naturally, since my diagnosis (Stage IV breast cancer with bone mets and an ever-changing pursuit by the docs of the right paliative regime for me), things have changed in terms of daily life. It's probably familiar to many of you to have suddenly to think in terms of the day-to-day, and any plans I have now take on a certain Herculean, even military, aspect. Tradition among my friends is that I travel to Paris every Xmas to visit a mixed bunch of dissidents from normality; centred on an old-fashioned bohemian set-up in a flat in Montmartre, eating goose and figs, listening to frantic French music, people calling in all hours of the night and day (do you hate me already??!) New Year is usually in a flat overlooking the Sacre Coeur with physical and emotional fireworks (who is sleeping with whom? Who is talking to whom?? Who's written a nasty article for Liberation about what and whom? Who has borrowed money from whom and not paid it back?? Who is contemplating a sex change and thereby antagonising matters [latter a bit far-fetched even for us, but you get the picture...]) I'm almost deranged in my determination to go as usual this year; yet something as generally so ordinary as getting on the Eurostar suddenly seems like a major undertaking. Everyone of course is telling me to come; all will be "as normal", etc etc. I'd be interested in people's views; particularly people who have normal lives with children and grandchildren who would never contemplate uphauling themselves for Xmas and New Year. Am I being at best selfish (I now live at home with parents and am close to an extended family); at worst reckless? What is the worst thing that could happen? I'd be really interested in what you think of this idea Cat xx

Steroid Stratosphere!

2008-10-08T12:27:51Z

WELL...By 12pm today I had done 30 minutes of salsa, been to the hairdresser and supermarket, made a cauldron of fresh mushroom soup and written half an essay on terrorist incursions into the Niger Delta (which I shall have to revisit in a more normal state as it is doubtless a load of frantic drivel!) I am the laziest person in the world! - If I'd had my hands on this stuff years ago I could have been the Prime Minister. Luckily for you all it was not to be... I assume this crazed energy-lunacy will not continue??? Domperidone is the name of the little pill; more effective than Dom Perignon, I can tell you.... Cat

"I WANT TO SPEND MORE TIME WITH MY FAMILY"

2008-09-24T23:08:28Z

Well, lucky old Ruth Kelly... Today, I finally heard the words I had semi-anticipated: "Stage IV"..."incurable"..."palliative care only"... blah blah blah How about this for irony: 22 years ago I was studying Russian in Minsk, [then] in Russia. I had received a letter from my mother telling me about how my dear 21-year old friend Ian had died from leukemia; I took the day off lessons and spent the morning thinking and sunbathing ON THE ROOF of the student hostel. BAD TIMING: cue hideous cloud of nuclear waste floating undetected over us. We were, in fact, 80 km downstream of the Chernobyl reactor, which had decided to blow. Two days later we were evacuated by the UK government. Who then showed no interest whatsoever in our fate; no follow-up instructions for research purposes; no debate on the potential medical downside of the nuclear industry, etc etc. Twenty two years (and several tonnes of alcohol and cigarettes) later, I have "incurable" cancer too. There has been "correspondence" between my docs and the Royal College of Surgeons on the Chernobyl issue, mainly about whether or not to administer RT to Hodgkins patients. All I am allowed to know is that there has been an "incidence" of cancer among the students who were in Minsk at the time of the "accident". Nothing about whether or not we might just be dying because of ignorance about nuclear power. Or whether smoking or driniking is a bad idea. You see my dilemma???? My friends have been utterly fabulous; my hopes are with the amazing and astonishing people I have been observing and lurking with on this website. Heartfelt thanks to those who have PM'd me; I hope to talk to you all soon. According to my consultant my lungs and liver are "apparently healthy and functioning". Bully for them, frankly. Anyway I just wanted to introduce myself and state for the record what a bunch of troupers you are: there is humour, wit, wisdom and empathy here, even in the darkest of hours. That's what I need, and THANK GOD for the internet because it has introduced me to people like you. Sorry if I sound negative; I will be laughing again in a couple of days. xxx Catriona